I think they want us to give up. A fellow autism mom said this the other day, and it stuck with me. She was responding to my venting about the difficulty and complications of getting services for our kids. Everything is a fight. Everything. For more than 20 years, I have had to fight for everything. Two amazing children, each with unique special needs. Incredibly smart kids deserving of anything and everything possible to make them productive, cared for and happy. And it’s god-damn exhausting. With every special service comes piles of paperwork and documentation, months of waiting. Hours spent on hold on the phone. Emails back and forth. Long conversations with government agencies, insurance companies, doctor’s offices, attorneys.
It’s a full-time job. I know I could have — and probably should have — made a full-time job out of being my kids’ mom, diaper-changer, butt-wiper, hand-holder, snuggle-giver, advocate, driver, lawyer, defender, teacher, tutor, speech therapist, social coordinator, entertainer, caregiver, chef, banker, financial planner, documentation provider and proofreader. The truth is, if I made it a full-time job, I would have lost my mind a long time ago. Or, I should say, I would have completely lost my mind.
Because here is the truth. I’m pretty bonkers. Somewhere along the way, I think a few years ago during the pandemic, the responsibility and enormity of it all hit me hard. I was working under protest from home — a full-time, crazy career, no less — and helping my son adjust to and pass virtual college while entertaining and teaching my demanding daughter full time. “I don’t know how you do it.” Yeah? Me neither. Many days I didn’t think I could do it. Many days I likely didn’t do a good job of it. I still don’t.
But here we are. And I’m so freaking angry. Not all the time, not every day. But today, right now, as I write this, I’m angry. Today I’m angry because I have spent a lot of time the past week fighting to get funding for my daughter. Funding she’s already approved for, funding she’s already budgeted for. Funding from a battle I already fought and won. But because of bull$hit bureaucracy and ridiculousness, I’ve had to go back and forth over this funding that is budgeted for and hasn’t been spent. So if it hasn’t been spent it can be spent, right? Seems so simple. But here’s the truth. It’s never simple. Never. And that’s what has my blood pressure up this week. It doesn’t have to be this difficult. It shouldn’t be this difficult.
That’s why even as I got some much-needed `me time’ over the weekend, I could feel my heart palpitating as I drove. I could feel my teeth grinding and my hands gripping the steering wheel for no apparent reason. It’s why I had to practice deep breathing and talk myself down from the ledge.
Because the battle never ends. Last week’s battle is over, yes. It was a small battle when compared to the many battles I fight. But I can never rest, even when the battle may be over, because no doubt there will be another within days.
I’m so tired. We’re all so tired. And the worst part — they’ve got us right where they want us. They want us to be tired. They want us to scream and cry, to give up, to say it’s not worth it, I don’t have the time for this. F.U. and your B.S., it takes too long, it’s too much paperwork, I don’t have two hours to sit on hold.
But here’s where they’re wrong. Because as my fellow autism mom said, they don’t know us. We’re not giving up. We may be tired, we may be fed up. But we’re not going anywhere. We’ll live without sleep. We’ll lose friends and family members because we’re so wrapped up in our own heads. Because they don’t understand that we’ve just spent three hours on hold and are just not up for small talk. That we’ve just spent an hour on the phone asking why our daughter keeps coming home with soiled underwear, or with her communications device uncharged. That today we just don’t feel like hearing how your child is driving you crazy because they can’t decide between a medical career or a year abroad, when my adult child can’t spell her name or dress herself.
Just today, I’m not in the mood. So I’m not going to answer the phone. I’m not going to go to that get together. I’m going to sit here and vent with my writing, feel a little sorry for myself, and F the world.
And when I’m done, I’m not going to talk about it. I don’t want to talk about it. Don’t call me up and say I read your post and I’m here for you. I read your post and I love you. I read your post and if you need anything I’m there. I know all that. I’m good. I’m sorry I can’t talk about it today, or tomorrow, probably ever. I want to squash it down into the depths of my belly, put my sneakers on and go for a walk to clear my head.
I have a battle to fight and I can’t lose.
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